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Nymph is at the time of this writing officially dying. My small and playful little friend may not make it until her appointment in the morning, which is a follow up to the emergency run today. My computer hopes are fully dead, because what is more important to me is life not tech. So my change jar is sitting emptied and I am not sure how to pay for what Nyny needs. I still don’t know all of what she needs.

What is killing her is either a perforation in her intestine, a growth/tumor, or a blockage though the latter is the least likely senario. Tomorrow she is going to have x-rays taken and the blood work and other sampling done today will be in. Tomorrow I will know if there is hope for her. Tonight she is getting medications that could kill me if I don’t wash up enough after taking them and that her bodily secretions will now enflame me over. I love her enough to hurt and itch. I love her. That’s enough to try. This is the best option and I will not let her die just because I was afraid of a little (okay very big) reaction. I am taking precautions but tonight I am wishing I had a god to pray to. M the carer said she will pray, I didn’t argue this. This week has been a bad week in general.

All of my fears for her, some of which seemed unreasonable last month when I was lamenting that she was so small and what ifs… they are all suddenly deadly accurate, terrifyingly so. This happens often, my fears are all logical possibilities but this one is an extreme possibility so why is this happening to her? If there is anything we can do, she will need surgery. There are no ifs ands or buts. I am not sure how to manage that, however, I am going to find a way. I may ask for help. I may? I probably will.

Her fever went up to 105, I was holding her and I felt the heat flairing up. Sprite is responding with sorrow. She’s so smart and when we left with the kitten she was in the window. When we returned she was in her “I has depresshuns” pose, just waiting for a photo and a lolcat caption. She didn’t like what I told her and Nymph likes the baths that are keeping her fever down even more.

The vet sent her home to cut my costs and because there is nothing that they can do for her until tomorrow. So, I am afraid. I am sorrowing. I am lamenting that there aren’t many options for animals unless you have money. This vet is the least expensive in town, I had already been shopping around. I know when I can afford to I am taking Sprite in. Even if Ny dies, I know that these people will do all they can to save her. Nymph said her first human words today, M the Carer was surprised, and I wish they hadn’t been words of fear. “No stop.” Having talking cats just seems to be my thing.

Nymph if she lives and is healthy enough, she will become a service animal. She has the right attributes, and she handled herself so well despite not feeling good. I am impressed with her grace under pressure. She doesn’t want to move or do however, and that is a big concern. When she didn’t want to play, she did yesterday but not today I knew we had to get her in. When I felt the heat in her body, I was scared. I was told by the vet if she had not come in today she would have died for certain. She had a seizure from her fever and is currently hiding and sleeping. I don’t blame her, she now associates the pink carrier of doom with anal probing thermometers and feeling crappy.

So I sit and I think on her tail, her ears, and her fun. She is fun. Nymph has helped me and I helped her. Her other potential home, if I didn’t want her was going to be with an old lady with 17 cats. A hoarder. Ny thrives here, thrived? The sick means past tense but I want her to thrive again. I am trying to stay positive but there’s always another element to anything. Enroute to the vets I had PTSD triggers, the location of my vet is in a bermuda triangle of some unknown event. Still, I think if I close my eyes until we get there and on the way home, then we will all be at least moderately okay and functional. Penicillin is not fun. Oh but the office is more accessible than the more expensive vet.

I feel helpless. I just got in from my date, which was fine but he revealed his misogyny over my pocket watch so there will not be another date. I then found out my friend’s son is in the hospital having emergency surgery. All I can think on right now is the fear she must feel, the sorrow, and my own emotions well up. This will likely be a very short post as I am going to try and find a way to offer my support. There is not much I can do, but I will do all I can.

Parts of me whirl with that ever present omnithought that never eases, even when I sleep. I think on how lucky he is to have a mother that doesn’t ignore his pain. I think on how odd it was that I dreamed about something similar. I think, I think, I think. I struggle to not feel. The empathy for her, for him, and for the pain has me on the edge of tears. I do not want to feel this.

I do not want to care, but at the moment this worry has dominated my thoughts and my heart. Over the last two years that I have known this family, I have been brought only joy. When it looked like I may have to flee this state to survive, they would have not just taken me in but hauled me across the country to do it. I don’t have many friends that I feel this close to. I do not want her to pain. I do not want him to suffer.

So I must let the feelings go. No one harmed him, it was an accident and that also feels out of depth. Just an accident in my reality is so rare, I think it has never happened before. Not where I could believe it. What do you do when there is no one to defend against? Who do you you shelter when there is nothing you can shelter them from?

When my family aches, I ache. When they break, my soul shatters. When they cry, I shed tears that few ever merit. When there isnothing but a prayer that can save someone, I sorrow on. I prayed. I prayed to the something. I wish I could feel that thing that religious people feel in this moment, and I hope that my friend and her son do. I understand a part of religion in this moment. It is a shield when there is nothing to grab ahold of.

I know that I will do anything she asks of me if it will truly help her family right now. I know she knows this. So I will take my empathy and I will let it live in me. I will love them and I will worry and mourn with them.

Yesterday because of a mistake in the office where my caregiver gets paid, I was told I had no carer.I have a bill I must pay on the first or my phone is turned off. There is no flexibility with in the system for me there, and so I grabbed money from my change jar and went to pay my bill. The harrowing five mile trip (plus whatever I do in stores) drains my chair battery, my battery, and can be scary enough when it comes to crossing the streets but the side walk is not up to ADA standards. I’ve said over and over once a certain someone returns my video camera I am going to video it, then push for changes. I don’t trust my city to take my word for it.

Over the bumps that bruise me and put me in enough pain that I get pale and shaky I go. I paid my bill, I bought some food that was easy to eat (deli meat, a rare treat) and I picked up a few things I wanted at Walmart, and priced a few others I need but must budget for first. I got asked out, flirted with a person and then headed home. About half way on my trip there is a curb cut so dangerous that I have mentioned it to my carer before. It is unavoidable, for the other side of the street has worse curb cuts. If I hit this curb wrong I could be thrown into the street. I hadn’t until yesterday.

I managed to keep out of the street but my chair ended up stuck. I tried reversing just a touch but that sent me going back at dangerous speeds towards the street. My chair was unable to go forward or backward. I waited ten minutes, full of trying to maneuver myself back to the safe spot (you have three inches to land in or you risk dying here, not a joke). I called 911,

I am already fighting off tears, I am at a bad angle that has me wanting to vomit and I have a big bag on my knees. The 911 operator answers, I fill her in and tell her where I am (I memorized the crossings just in case) and then she asks “So can’;t you just get up and push your chair to a safe spot?” Now, I know some people like me can walk a bit without our chairs, but no, I cannot do this. I am hanging by my antitip tires, I can feel myself falling a bit more and she wants me to merrily pop up and fix it.

“No, it’s a wheelchair.” Valid response.

“Uh… well okay I’;ll send someone.” She was annoyed. She didn’t want to bother with a wheelchair user that surely must’ve done this on purpose.

She has me on hold, and while she is trying to find someone to send (this took about thirty seconds, she did work fast but none the less ableism much?) a truck drives up, I saw this truck pass me ten minutes before, because I remembered liking the color and lines. I like cars, I remember them. Out steps a really hot guy. I mean, wow. That this was my first thought should indicate how hot he is. Mr.Tattoos says, “I’m here to help!” Swoon? Only because I am really dizzy from bad angles.

He looks at the problem and then says, “Hold on.” He LIFTS MY CHAIR (that’s not a small feat) and plants me where I need to be. He then says, and this is the part that makes me go huh what? “Hmm, this curb cut is dangerous, I hope you are almost home.” Then, “I would like to ask you out.” I got his number, and appreciated that he understood this was not the right time to set up anything. He said a part of my charm was that I wasn’t crying and was trying to save myself first.

The 911 operator fails more here, because she did wait to see if he could rescue the damsel in distress, “Well see you didn’t really need to call us. You should’ve just waited for someone to come along.” Right, with the sun setting, I want to wait to see if a stranger may stop. I am stuck outside of a business that has been closed for over a year. I am in an area where I have NEVER seen anyone stop. The reality is, this man saw a person in trouble and could identify it and stopped. It took him ten minutes to find a place to turn around. I did the right thing by calling. I even told her all of this. “It’s a shame I am going to have to make a complaint against you and will probably be suing the city.” Then I hung up. Let her wonder. Let her fret. (I did file a complaint this morning, her boss is NOT pleased at all.)

Mr.Tattoos did not fail. In fact I had an oddly ableism free day excluding 911 lady. I was treated like a person all day, instead of like I had wheels for a face. Even the cashier at Walmart this time was so awesome. She asked me how I wanted my bags arranged, and she presumed I knew exactly how to maneuver myself. No one once made me feel like I should apologize for existing.

Now there is something more. My journey wasn’t complete after all. I made it home, and decided to check the mail. This is a ritualistic thing for me, and is part of my set of complusions. I am compelled with mail, it brings me solace. Mail means everything is okay. I had mail! and then dropped my keys… a man was walking past so I asked for help. He helped me get the package out of the box, my keys and then asked me out. “Wow you have such pretty eyes.” I entered my home with three numbers, while blushing.

So not only did the 911 person fail but man three hotties to date! I am taking this as a sign on dating, it is time. Which I knew already but wow. Silver platter me much?

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.